An Episcopal (Anglican) Chaplain in the Saint Luke's Health System of Kansas City, reflecting on work and faith and life. NOTA BENE: my opinions are my own and do not represent the Episcopal Church or the Saint Luke's Health System.

Wednesday, June 18, 2008

Returning to Those Hard Conversations

Some years ago a nurse of my acquaintance asked me the following riddle:

Q: Why to they screw down the casket lids when a patient dies of cancer?A: To stop the oncologist from saying, “Wait – there’s one more thing that we might try.”

Of course, the joke isn’t fair to oncologists, is it...?

What brought that to mind was this article I found in the “In the News” list on the website of the Center for Practical Bioethics. The story relates to a paper presented at the recent 2008 Annual Meeting of the American Society of Clinical Oncology (ASCO). The paper described results of a research study looking at patients whose physicians had offered end of life (EOL) discussions, with clear information about the patient’s prognosis and all treatment options, including palliative care and hospice. Perhaps we should speak here of two papers, because two papers were presented that, from the abstracts, were clearly related but different results of a single research study. The papers were, “Associations between advanced cancer patients' end-of-life conversations and cost experiences in the final week of life” (B. Zhang et al; abstract here) and “Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians” (A. A. Wright et al; abstract here).

According to both abstracts, “Coping with Cancer is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of 603 advanced cancer patients. Patients were interviewed at baseline and followed through death…. 188 of 603 patients (31.2%) reported EOL [end-of-life] discussions with physicians at baseline.” At the time the information for these papers was collected 323 had died, including 148 whose doctors had offered EOL conversations. Charts of all 323 were reviewed, and those of patients who had had EOL conversations were compared with the charts of those who hadn’t.

In important ways there were no significant differences between the 148 and the other patients who had died: they “did not differ in socio-demographic characteristics, psychological measures, treatment preferences, attitudes toward doctors or terminal illness acknowledgement.” (Zhang) At the same time, the costs for the patients who had had EOL discussions were 30% less in the last week of life. This was the result of different decisions. “They were more likely to acknowledge being terminally ill, value comfort care over life extension and complete a DNR order. [Also,] patients reporting EOL conversations were less likely to undergo ventilation or ICU admission and more likely to receive hospice.” (Wright)

So, why would only one third of the patients have an EOL discussion with their physicians? “Physicians are concerned that end-of-life (EOL) discussions may distress terminally ill patients, and may not offer benefit.” (Wright) There is the fear, sometimes articulated, that giving patients bad news, however accurate, might lead the patient to “give up.” However, that isn’t borne out by this study. Patients who had EOL discussions were not in fact more likely to be depressed or anxious. (Wright) Again, they “did not differ in… psychological measures….” (Zhang) They were, however, more informed about their prognoses, and more likely to make decisions that were reasonable in light of those prognoses, and especially “to value comfort care over life extension.”

The news article seemed to me to express surprise that so few of the patients in the study had had end-of-life discussions with their physicians. For me, and I expect for anyone experienced with patients approaching the end of life, the response was, “Well, duh!” It is axiomatic that all too often patients are not informed about hospice services until they’re too debilitated to really benefit from them. The critical criterion for admission to hospice is a medical prognosis that the patient will live less than six months. My colleagues, chaplains in hospice, still speak of how often patients are admitted to hospice so late that they live perhaps six days, because the oncologist waited so long to have the end of life conversation. A document available from the Center for Medicare Services (CMS) notes that

The average length of stay has been steadily increasing. However, the long lengths of stay are becoming longer. For example, in 2005, Mississippi, Alabama, and Oklahoma had an average length of stay of 122, 113 and 108 respectively, while the national average was 67 days.

That is, for patients told they have an expectation of living six months or less (180 days), the average length of stay was only about a third that. But, let’s also note that 67 days is the average. If “long lengths of stay are becoming longer,” we need to recognize just how many patients have much shorter lengths of stay so that the average is not higher.

So, this continues to be a problem. Even as we seek to develop better techniques and programs for palliative care, physicians are still not clear with their patients that a time comes when medicine has nothing more to offer for therapeutic benefit (again, as opposed to palliative benefit) – probably because the physicians are not being clear with themselves. I have certainly encountered physicians for whom their work was a battle with the disease. These physicians are, of course, determined and almost single minded in this battle (and, after all, those are the very characteristics that helped them survive medical school and residency). Unfortunately, they become analogous to the person of faith who “is so heavenly-minded as to be no earthly good.” They focus so completely on the disease that they lose track of the person who’s suffering from it. This is not to say that they don’t care; they care passionately. They simply conflate and confuse doing their worst to the disease with doing their best for the patient; and those goals aren’t always the same.

I commend these abstracts to your attention, as well as a number of other abstracts on similar subjects from the ASCO Annual Conference. It gives me some hope that more physicians will note them; for, if it’s axiomatic for non-physicians that these end-of-life discussions have great value, it’s also axiomatic physicians will take these things more seriously if they hear them from other physicians than if they hear them from the rest of us. With these and other continuing studies, we will eventually help physicians see that these end of life discussions, however difficult, are best for their patients; and what is best for patients is a goal we all share.

1 comment:

My father in law was diagnosed with end-stage lung cancer. Between the original symptoms and fears to the day of the biopsy was less than 5 days, and the biopsy and other test results showed the cancer had already metastasized to various organs, including the brain. The oncologist explained to my husband and myself that my father in law had 6 months to live, maximum. He didn't make it 4.

The rest of the family, including my father in law, didn't seem to understand what we'd been told. My father in law's wife had been in the room with us, but she couldn't comprehend the only time it was said. Father in law was never told. The oncologist would just say "we're doing what we can" and "let's try this and see". Complicating matters, both radiation therapy and chemo were started immediately, so family thought that such "treatment" meant the cancer might be eradicated. But we'd been told explicitly precisely ONCE(after I had to ask what the doc meant) (and never again was it said) that the treatment was to remove the pain he was in because the tumor in his chest was causing such back pain, etc.

Father in law was quickly put on a laundry list of medications that impaired his cognitive function, as well, in an effort to decrease his pain. He was too altered from the meds to discuss things with us, or with his doctor. This made the fact that the rest of the family didn't seem to understand what was going on even harder.

It was a difficult 4 months for my husband, being the only family member who understood or admitted what was going on. It wasn't that we didn't want to hope, it was that the rest of the family was in denial. Such deep denial that they could not be reasoned with. No one in the family would talk about getting a will or a trust in order. Not father in law, not anyone else. When father in law was approached, he'd say that he'd deal with that next week, because treatment and meds and were sapping his strength.

It soon became clear that father in law and his wife COULD NOT handle coordinating his care from home. He needed daily visits to the hospital for treatment; several medications a day; he was incontinent, he had difficulty standing, he was altered. But absolutely no one would talk to us about hospice as a solution to those tasks, because the oncologist hadn't brought it up, and so the family told us we were basically "giving him up for dead" to try and move him into such a facility. We attempted to hire full time nurses. That too was brushed off because the mere suggestion that the wife couldn't handle this, that this wasn't a temporary problem that would go away, was an insult and would cause her to go back to such great denial that she'd walk out of the house for hours.

After 3 1/2 months, my husband finally begged for an intervention with some other family friends. The wife finally acquiesed to permit home hospice care. The next day, after one day of home hospice care, the home hospice staff made a command decision and put father in law into the hospice. by then, he was too incoherent to say anything. But the nurses at least saw that his wife wasn't handling things properly, couldn't handle things.

Eveyrthing you say is true. Everything that could have made my father in law more comfortable didn't happen because hospice came too late. No one was coordinating his meds properly--just his wife, who couldn't get the dosage or the times right. He was incoherent in those final months, when instead, in hospice, they would have been able to change his medication, discuss those changes, experiment until they found something that worked for him so he could communicate at times and handle his pain, too. They didn't get to help his wife or the rest of his family deal with the grief either. Instead, grief was denied, and final, critical moments of trying to share time with father in law were instead moments of his complete gone-ness, too far gone to say what everyone should be able to say.

The doctors bear large part of the responsibility for telling the patient what is happening. Instead, they were too afraid or reticent. It's yucky--and it was yucky. But to let the whole family suffer instead is not compassion.

The family rifts from that time are still not healed. There are arguments because no will/trust was ever put in place for beloved belongings. There are arguments because everyone feels someone should have made different choices about father in law's medical care in those months--because they didn't have all the information available, because they weren't told and weren't fearless enough to ask. There are arguments and hard feelings that will never heal now.

Hospice, even for 2 weeks, was a godsend for my father in law. But it could have been something that helped the whole family instead.